living with alzheimer’s
for people with alzheimer’s
taking action workbook
Taking Action Workbook
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Taking Action Workbook
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table of contents
Introduction4
1. Understanding Alzheimer’s disease and memory loss 5
2. Partnering with your doctor 10
3. Effective communication
13
4. Telling others about the diagnosis
16
5. Caring for our most important relationships:
family and friends 19
6. Making decisions
22
7. Legal and financial issues
26
8. Playing it safe
29
9. Daily strategies for living with Alzheimer’s
36
10. Coping with changes
40
11. Opportunities for supporting research
43
12. Resources for people with early Alzheimer’s disease
46
Appointment log
48
Medication log
49
Acknowledgements50
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introduction
If you are a person living with Alzheimer’s disease or another dementia, then this book
was designed for you. Think of it as a personal guide and workbook to help you in
learning about the disease and steps you can take to help yourself. This book is designed
to help you learn about the disease and the steps you can take to live your best life with
Alzheimer’s disease. You may also want to attend the Living With Alzheimer’s for People
with Alzheimer’s education workshop in person or online at alz.org.
The Taking Action Workbook addresses common concerns and issues faced by
individuals living in the early stage of Alzheimer’s or a related dementia. Each section
includes educational information, perspectives of people with early-stage Alzheimer’s,
and space to write down personal ideas, plans and feelings. A checklist page of
“Things I Can Do” is a quick summary of strategies for taking care of yourself.
People learn in different ways — either by reading, writing or talking to others.
You may find the workbook useful in educating yourself and others. It can be used as
a way to begin conversations about changes and how you feel about what is
happening to you.
Writing down important ideas and information is a helpful memory aid. Written
information can be easily shared with others too. You may experience new and
different feelings associated with the disease. This is a normal part of the process.
Journaling your feelings is a great way to keep a record of them and is also a good
coping strategy. This book may help you to identify those feelings and talk to others
about your feelings, ideas and plans.
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1. understanding memory loss
Aging, memory loss, dementia and Alzheimer ’s
disease: what’s the difference?
Normal aging
• Recent memory — the ability to learn
and recall recently learned information.
We all know that many things change as
we age. In normal aging, our bodies and
brains slow down, though intelligence
remains stable. We are less physically and
mentally flexible, and we take more time
to process information. Memory changes
occur as well, and it’s common to have
greater difficulty remembering names of
people, places and other things.
• Language — the ability to write, speak
or understand written or spoken words.
• Visual spatial function — the ability
to understand and use symbols, maps
and the ability to correctly judge where
objects are.
• Executive function — the ability to
plan, reason, solve problems and focus
on a task.
Mild cognitive impairment (MCI)
In MCI, a person has problems with
memory or another core brain function.
These problems are severe enough
to be noticeable to other people and
show up on tests of mental function,
but not serious enough to interfere
significantly with daily life. People with
MCI have an increased risk of developing
Alzheimer’s disease in the near future,
especially when their main symptom
involves memory. However, not everyone
diagnosed with MCI progresses to
Alzheimer’s or another type of dementia.
Alzheimer’s disease
Alzheimer’s disease is the most
common cause of dementia. It is a slow,
progressive illness that damages nerve
cells in the brain. Symptoms gradually
get worse over time as more brain cells
are destroyed. Though people can have
Alzheimer’s in their 40s, and 50s, the
disease is most prevalent in people over
age 65.
Dementia
Dementia is not a specific disease. It
is a general term that describes a set
of symptoms that may be caused by a
number of different brain disorders. These
symptoms involve mental decline severe
enough to disrupt daily life that affect
more than one of the following core brain
functions:
Taking Action Workbook
Because there are many causes of
dementia, it is important to find out
the disease responsible for these
symptoms. Alzheimer’s disease
is the leading cause of dementia,
accounting for 70 percent of cases.
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Getting a diagnosis
If you are reading this workbook, you may
have a diagnosis of Alzheimer’s disease or
another dementia. If so, you already know
how important it is to rule out the other
conditions that can look similar and may
be treatable or curable.
The first problem many people with
Alzheimer’s disease notice is forgetfulness
severe enough to affect their daily
life, hobbies, social life or work. Other
common symptoms include mood
changes, difficulty multitasking, misplacing • Neurological examination tests the
things, repeating things, confusion, trouble
nervous systems (brain and spinal
organizing and expressing thoughts, and
cord) for evidence of other neurological
becoming disoriented or lost in familiar
disorders. A magnetic resonance imaging
places. Although there is currently no cure,
(MRI) or completed tomography (CT)
treatments for symptoms are available
study of the brain may be used to search
and most effective when used early in
for other possible causes of dementia
the disease. Getting a diagnosis is the
(e.g., stroke). Scans of the brain are not
first step toward understanding what’s
yet accurate enough to determin the
causing your symptoms and taking action.
cause of the person’s dementia.
Treatment can only be started when the
disease has been identified. A complete
• Laboratory tests, such as blood
medical evaluation often includes:
and urine tests, provide additional
information about other problems that
• Physical examination includes the
may be causing dementia.
evaluation of a person’s nutritional
status, blood pressure and pulse.
• Neuropsychological evaluation tests
memory, reasoning, vision, motor
coordination and language function.
This evaluation may provide the only
evidence of dementia, especially in the
early stage.
• Medical history provides information
about current mental or physical
conditions, prescription drug intake and
family health history.
• Mental status evaluation assesses a
person’s sense of time and place and his
or her ability to remember, understand,
talk and do simple calculations.
Taking Action Workbook
• Psychiatric evaluation provides an
assessment of mood and other emotional
factors that could mimic dementia or that
may accompany Alzheimer’s.
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Principles for a
Dignified Diagnosis
Explain the purpose of different tests
and what you hope to learn. Testing
can be very physically and emotionally
challenging. It would help me to know
what the purpose of the test is, how
long it will take and what you expect
to learn from the process. I would also
appreciate the option of breaks during
longer tests and an opportunity to
ask questions.
Principles for a Dignified Diagnosis is
the first statement of its kind written
by people with dementia on the subject
of the Alzheimer diagnosis experience.
These principles are their insights on
how to make that experience better.
Although you may already have a
diagnosis, it may be helpful to share
these principles with your doctor to
communicate more effectively.
Give me tools for living with this
disease. Please don’t give me my
diagnosis and then leave me alone to
confront it. I need to know what will
happen to me, and I need to know not
only about medical treatment options but
also what support is available through
the Alzheimer’s Association and other
resources in my community.
Talk to me directly, the person with
dementia. I am the person with the
disease, and though my loved ones will
also be affected, I am the person who
needs to know first.
Tell the truth. Even if you don’t have all
the answers, be honest about what you
do know and why you believe it to be so.
Work with me on a plan for healthy
living. Medication may help modify some
of my symptoms, but I am also interested
in other recommendations for keeping
myself as healthy as possible through
diet, exercise and social engagement.
Test early. Helping me get an accurate
diagnosis as soon as possible gives me
more time to cope and live to my fullest
potential and to get information about
appropriate clinical studies.
Recognize that I am an individual and
the way I experience this disease is
unique. This disease affects each person
in different ways and at a different pace.
Please be sure to explain how this disease
may change my life with this in mind.
Take my concerns seriously, regardless
of my age. Age may be the biggest risk
factor for Alzheimer’s, but Alzheimer’s
is not a normal part of aging. Don’t
discount my concerns because I am
old. At the same time, don’t forget that
Alzheimer’s can also affect people in
their 40s, 50s and 60s.
Alzheimer’s is a journey, not a
destination. Treatment doesn’t end
with the writing of a prescription. Please
continue to be an advocate — not just
for my medical care but for my quality of
life as I continue to live with Alzheimer’s.
Coordinate with other care providers.
I may be seeing more than one specialist
— it is important that you talk to my
other providers to ensure you all have
the information so that changes can be
identified early on and that I don’t have
to repeat any tests unnecessarily.
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Some people with Alzheimer’s say…
“Getting a diagnosis can be a relief. It helps explain why I feel this
way and why things are harder to do. I accept it and live with it.”
“I’m not the same as I was since diagnosis. It’s so exasperating!
Sometimes my mind goes someplace else…I cannot get a hold of it!”
“It’s much easier when you have a name for your problem because
you know why something is wrong and it is not your fault.”
My thoughts…
When I first received my
diagnosis, I felt:
___________________
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What the words “Alzheimer’s”
and “dementia” mean to me:
___________________
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What I want to know about
Alzheimer’s disease
and dementia:
___________________
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Things I can do now:
•• Take time to adjust to the diagnosis.
•• Discuss results of my memory evaluation with my doctor.
•• Get a second opinion if needed.
•• Ask lots of questions.
•• Call the Alzheimer’s Association for information on programs
and services.
•• Stay engaged and connected with others like you.
Notes:
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2. partnering with your doctor
Developing a working relationship with
your doctor is a very important part
of managing your illness. It can take
some time, but it is very important that
your doctor gets to know you. You can
help by being open and honest.
Here are a few suggestions from
professionals and people with memory
loss that may be helpful.
Prepare for the visit
• Make a list of questions as they
come up, and take them to your next
doctor’s appointment. (Sometimes
it is hard to remember everything
you wanted to ask while you’re at the
doctor’s office.)
At the doctor’s appointment
• Be open and honest about how you
feel mentally and physically. Truthfully
answer the questions that the doctor
asks. If you don’t know the answers,
let him or her know. This helps the
doctor to understand how the disease
is affecting you and what treatments
can be prescribed to help.
• Ask the doctor questions that
you have about the results of
your memory testing or any other
symptoms that you have.
• Ask a family member or friend to go
with you. It helps to have someone
there to ask questions and remember
what the doctor said.
• Ask what medications or treatment
options are available. Inquire about
whether you would be a good fit to
participate in any clinical studies.
Clinical trials can provide access to
cutting-edge treatments and expert
medical care.
• Write down the changes that you and/
or family members have noticed.
Share this information with
your doctor.
• Ask for specific information about
how to take care of yourself.
Ask about options. Agree on a
treatment plan.
• List all prescription medications,
vitamins and over-the-counter
medications that you take, and
share the list with your doctor
(use medication log on page 47).
• Take notes during the doctor visit.
Request written information about
your medical condition
(use appointment log on page 46).
In business and in family
relationships, the most important
thing is trust.
— Anonymous
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Some people with Alzheimer’s say…
Doctors can be helpful…
“by giving clear information about memory testing, evaluations and
results.”
“by being honest about the diagnosis and periodically discussing the
progression of the illness.”
“by staying informed about the latest medications and interventions.”
“by letting me know about current research and clinical studies.”
“by treating me as a person, not a disease.”
My thoughts…
The people I want included on my The qualities I look for in
health care team:
a doctor:
___________________
___________________
___________________
___________________
__________________
__________________
__________________
__________________
What I want my doctor to know
about me:
Questions for my doctor:
___________________
___________________
___________________
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Things I can do now:
•• Call the Alzheimer’s Association
for a list of local doctors and
diagnostic centers, as well
as information about current
treatments.
•• Keep a log of medical
information. Record physical,
mental and emotional changes
to share with my doctor.
•• Before each visit, make a list of
my top three concerns to share
with my doctor.
•• Ask my doctor what he
or she knows about
Alzheimer’s disease.
•• Learn clinical studies and decide
whether or not they are
a good option for me.
•• Bring an updated list of
my prescription and
over-the-counter medications
to each doctor visit.
Notes:
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3. effective communication
Alzheimer’s disease affects many
parts of your brain. Because of this,
you may need to explore new ways to
communicate with people.
You may experience some of the
following changes:
•• Problems finding the right words or
losing your train of thought.
•• Repeating words, stories
or questions.
•• Getting words confused or out
of order.
•• Problems understanding what
someone is saying to you.
•• Problems with spelling or writing.
Communication is more than talking
and listening. Communication is a way
of letting people know what you are
thinking, feeling or wanting.
Communication is an important part
of your relationships with family
and friends. If words and sentences
become difficult for you, explore new
ways to communicate. Be open and
honest with your family and friends
about how the disease is affecting you.
Find new ways to communicate
•• Slow down, take your time and
don’t worry about small facts
or details.
Taking Action Workbook
•• Find a quiet place where you will
not be disturbed or distracted.
•• Tell people when you are having
difficulty speaking or understanding.
•• Come back to it later.
•• Try describing the person, place or
thing if you cannot recall a name.
•• If you use a notebook as a
memory aid, carry it with you and
refer to it as needed to help you
communicate.
It may help to know that:
•• The changes you are experiencing
are because of the disease.
•• You will have good days and
bad days.
•• The disease affects each person
differently and symptoms will vary.
•• Trying different ideas will help you
find comfortable ways to cope.
•• Some suggestions may work for
you and others may not.
•• You are not alone — more than five
million Americans have Alzheimer’s.
•• Talking with others who are also
living with the disease can help you
feel understood and supported.
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Some people with Alzheimer’s say…
“It feels good when people listen to me instead of telling me what to do.”
“Do not keep asking me questions. This can frustrate me and make
me feel like I am being tested.”
“Because I cannot remember does not mean that I am dumb.”
“When I forget, be patient with me. Please do not make excuses for
me. When you do, it makes me very angry and I may feel you do not
understand what I am feeling inside.”
My thoughts…
Talking is most difficult or
frustrating when:
When I have problems
communicating, I want people to:
The best time for me to discuss
important matters is:
When I have problems
communicating, it helps me to:
__________________
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Things I can do now:
•• Take my time.
•• Tell people that I have
problems concentrating,
remembering and
understanding at times
because of the disease.
•• If I have a problem
remembering, let it go, move
on, forget it; maybe it will come
back later.
•• Write things down. It may be
easier to communicate and
remember by using notes.
•• Find new ways to express
myself. Try painting, singing,
writing, drama, etc.
•• Work out a signal to my family
when I need assistance with a
word, thought, or when I want
to take a break.
•• Recognize that I have a
neurological disease that
can make it difficult to
communicate.
A friend is someone who knows the
song in your soul and sings it back
to you when you have forgotten
the words.
— Anonymous
Taking Action Workbook
Notes:
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4.telling others about the diagnosis
When you learn that you have
Alzheimer’s disease or a related
dementia, you may not believe it, or
you may feel overwhelmed, confused,
or angry. You may be hesitant to tell
family and friends about your diagnosis
due to concerns about how they will
react. Perhaps you worry that they will
treat you differently. You may not want
sympathy or help, but you may want
the people you are close with to know
because you care about them. Having
the support and understanding of your
family and friends can help you enjoy
life and live more independently.
Who do you tell?
•• People you know well and trust.
•• People you love.
•• People to whom you are responsible
(partner, spouse, others).
•• People from whom you may need
assistance (neighbors, strangers).
going on with you.
•• When planning or making
decisions about your future.
•• When you need help
from someone.
•• When you know they need
to know.
•• When you want to educate
someone about the disease.
•• People who “need to know.”
•• Anyone you want.
When do you tell family, friends
and others about having
Alzheimer’s disease?
•• When it feels like the right time.
•• When it helps to explain what is
Taking Action Workbook
Friends in your life are like pillars
on your porch. Sometimes they hold
you up, and sometimes they lean on
you. Sometimes it’s just enough to
know they’re standing by.
— Ralph Waldo Emerson
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Some people with Alzheimer’s say…
“Now that they know, they can help if something comes up...it’s a
relief that they know.”
“I tell them when they recognize I’m not quite like I used to be. It
helps explain what is going on.”
“Your friends are your friends. Tell them what is happening to you.”
“At first I tried to hide that I had memory problems, but when I
finally told people, it was like a huge weight lifted off my shoulders.”
“I can’t change the diagnosis, but I can educate others. Talking
about what it is like to have this disease reminds me that I still have
something important to say.
My thoughts…
I will know it is time to tell others
about my diagnosis when:
Deciding to tell others about my
diagnosis makes me feel:
___________________ __________________
___________________ __________________
___________________ __________________
___________________
My fears about telling others are:
___________________
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Things I can do now:
Notes:
•• Be proud of myself for having
the courage to tell people.
_______________________________
•• Inform my family and friends.
Ask for their help telling others.
_______________________________
•• Tell people that I sometimes
have difficulty concentrating
and remembering.
•• Tell people that even though
I have Alzheimer’s, There are
many things I can still do.
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•• Participate in Alzheimer’s
Association programs for
people with early-stage
memory loss. Invite a family
member or friend to join me.
_______________________________
•• Educate others about
Alzheimer’s disease.
Provide materials from the
Alzheimer’s Association.
The more they learn, the more
comfortable they may feel.
_______________________________
•• Let people help me. Know
that it makes them feel good.
Taking Action Workbook
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Courage and openness go hand in
hand. Our courage helps us take the
risk to try something new.
When we are fearful, we see only
one way. Courage opens the ways
to new possibilities!
— Anonymous
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5. caring for our most important
relationships: family and friends
Memory loss and other symptoms
can bring about changes that affect
relationships with family members and
friends. In the beginning, it is natural
for you and some family members to
experience denial about your condition.
Denial is common and it is a way to
buffer oneself from the painful feelings
that go along with having a diagnosis of
Alzheimer’s disease.
It is important to recognize that every
individual will have a different reaction
to your diagnosis. For each of them, as
well as for you, it will take time to adjust.
During this time, like some friends and
family members may pull away and
distance themselves a bit, while others
will show an increasing amount of support
and want to help.
In addition, you may feel that you need
to rely on family and friends more than
you used to and probably more than you
want to. This shift in responsibility can
lead to feelings of frustration, guilt or
resentment. And unwanted help can feel
overprotective or intrusive. Keep in mind
that at some point in life, we all need help
from others. Accepting help is a sign
of strength even though it can be
uncomfortable.
The following questions can help
you determine if you need help:
•• Is an activity or task more frustrating
and less enjoyable than before?
•• If I make mistakes repeatedly, could I
harm myself or others, such as when
driving, paying bills or managing
finances?
•• Have I stopped doing something I
enjoy because I can’t do all the steps,
such as baking, doing a hobby, or
playing sports or games?
•• Have I been confused about my
medication or forgotten to take it?
It is essential to listen to trusted family
members or friends when they express
concern and ask for your cooperation in
letting go of an activity or task. They may
be aware of a change that you may not
be because of your memory loss. As a
person living with dementia, you can help
friends and family by allowing others to
help you. This new partnership not only
helps in getting tasks done, it can also
provide the opportunity to spend precious
time with family and friends.
The foundation of relationships is based on the premise of mutual purpose.
— Ralph Waldo Emerson
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Some people with Alzheimer’s say…
“I don’t like it when they tell me they are caregivers. The word
‘partner’ seems better. We help each other. I don’t need a babysitter.”
“Together we can get better results.”
“People want to help where needed. You do them a favor when you
let them help you.”
“I don’t want to be totally dependent. I find ways that I can still
contribute and be involved.”
My thoughts…
The way Alzheimer’s has affected
my relationships:
___________________
___________________
___________________
___________________
Ways I would like to see family
and friends support me:
__________________
__________________
__________________
__________________
Accepting help from others
makes me feel:
___________________
___________________
___________________
___________________
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Things I can do now:
•• Allow myself to accept help
from others.
•• Focus on and celebrate the
things I can do.
•• Learn as much as I can about
Alzheimer’s and encourage
family and friends to ask me
about what it is like to live with
the disease.
•• Work with others I trust to
identify activities I need
assistance with in order to
reduce stress.
•• Share my feelings about how it
feels to accept help (what am I
gaining and what am I losing?)
•• Connect with others who
have to talk to others with
similar concerns.
•• Get individual or family
counseling to help resolve
conflict and adjust to changes.
•• Remember to say “thank you”
to those who support me.
Taking Action Workbook
Notes:
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6. making decisions
We are all faced with making many
decisions over the course of our lives.
We make decisions daily such as
what to eat, wear or do today. Other
decisions are more complex and can
affect our lives now and in the future.
Making decisions will gradually
become harder because the disease
can block your ability to process
information — to remember, organize
things, solve problems and even
recognize when you are having
difficulty making decisions.
It is important to choose someone to
help you with decision making.
Things to consider:
•• Choose a person you trust to help
you — often it is a family member.
•• Choose a second person if the
first person is unable to help
when needed.
•• Discuss your wishes with your
family or care partner. Important
issues to discuss include: handling
finances; when to stop driving;
when to use community services
for help with meals, transportation
and activities; time-off for your
primary care partner; your care and
living arrangements when a change
is necessary; and when to retire if
you are still working.
Tips for involving family:
•• Identify those family members who
can provide assistance.
•• Advise family of what’s needed
instead of assuming they know.
•• Stay in touch.
•• Hold a family meeting.
•• Recognize differences.
•• Share responsibilities.
•• Your feelings about receiving
help with making decisions may
fluctuate from relief to resentment.
•• Get an outside opinion if you
disagree with decisions that
are made. An Alzheimer’s care
consultation can help.
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Who else do I want on my
care team?
Creating a support system early on
in the disease process is important to
ensure people are well aware of your
wishes. In addition to your family,
evaluate professional and community
support systems:
Professional Support
•• Alzheimer’s Association
•• Case managers
•• Geriatricians
•• Neurologists
•• Psychiatrists
•• Counselors
•• Lawyers
We may not always see eye to eye,
but we can try to see heart to heart.
— Sam Levenson
Community Support
•• Place of worship/faith community
•• Neighbors
•• Friends
•• Clubs
•• Senior centers
•• Volunteer organizations
•• Gym
•• Financial planners
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Some people with Alzheimer’s say…
“Feel OK about the change. Trust others to understand.”
“Being able to solve problems with others gives me hope.”
“Every bit of help is so important. Use please and thank you.”
My thoughts…
Two people who I would like to
help me with making decisions:
If more assistance than my care
partner, family and friends can
provide, I would like:
_________________
2) _________________ __________________
__________________
1)
I want help with making
decisions about/plans for:
__________________
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Allowing others to make
decisions on my behalf makes
me feel:
__________________
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Things I can do now:
Notes:
•• Delegate decision making to
someone I trust.
______________________________
•• Make a list of things I want to
discuss and for which I need to
make plans.
•• Discuss with my family or
care partner what I want to
happen if I can no longer take
care of myself. (e.g., move to a
residential setting or bring care
into the home).
•• Build a support team of family,
friends, professionals and
community resources.
•• Tell others my care preferences.
Complete advance directives
and identify a durable power
of attorney.
•• Be willing to try new services
or involve new people in my
life to give my care partner
time off.
•• Be patient and give myself
time to adjust to transitions.
•• Speak up for myself. Make my
needs known.
______________________________
______________________________
_____________________________
_____________________________
______________________________
______________________________
______________________________
______________________________
______________________________
______________________________
______________________________
______________________________
______________________________
______________________________
______________________________
______________________________
______________________________
______________________________
Taking Action Workbook
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7. legal and financial issues
Legal planning
There are a number of legal and financial
documents that will help you formalize your
plans and wishes. These are documents that
everyone should have in place. However,
when a person has an Alzheimer’s diagnosis,
there is no time to delay. Taking the time to
put these documents in place now will be a
big help to you and your family in the future.
Encourage family members to complete these
documents for themselves as well. If your
situation is complex, consult with an elder law
attorney, who can provide you with up-to-date,
state-specific expertise.
•• Financial durable power of attorney. In this
document, you name a person to take care
of your financial matters, in the event that
you become unable to do so for yourself.
•• Medical durable power of attorney. In this
document, you name a person to carry out
your medical decisions for you, in the event
that you are unable to do so for yourself.
•• Living will. This document states your
preferences regarding life-sustaining
treatments, in the event that you are
unable to make decisions for yourself (e.g.,
use life support).
•• Will. This document describes your
financial estate, identifies an executor and
beneficiaries and itemizes its distribution in
the event of your death.
•• Do not resuscitate (DNR) order.
This document is a doctor’s order that tells
emergency personnel what to do if your
heart and/or lungs stop. Talk with your
doctor if you want to obtain one. State
laws vary.
•• Hospital visitation form.
This document states who can visit you
in the hospital and under what conditions.
Taking Action Workbook
It is especially important for people in
domestic partnerships because in some
states hospitals may enforce strict
visitation laws and/or require special
forms if the relationship is not legally
recognized in that state
All of these documents express your
wishes. Planning takes time and careful
consideration. Once you have completed
your plan, you can enjoy a feeling of
confidence. Knowing that your wishes have
been shared.
Financial planning
Cost of care and household expenses can be
big concerns after an Alzheimer’s diagnosis.
Whether you were retired or working
when diagnosed, plans should be made for
future care costs, including in-home help or
residential care. Work with family members
and develop a financial plan. If your finances
are complex, consider meeting with a
financial planner.
Many different sources can help pay for
care and it is important to understand what
services and types of care each one covers.
These sources include:
•• Insurance (e.g., Medicare, disability,
retiree coverage, life insurance, long-term
care insurance, employer-paid plan).
•• Retirement benefits (e.g., individual
retirement accounts, employee-funded
retirement accounts, Social Security).
•• Personal savings and assets
(e.g., stocks, bonds, savings
accounts, real estate).
•• Government programs (e.g., Medicaid,
Supplemental Security Income, Social
Security Disability Insurance, Veterans
Benefits, tax deductions and credits).
263/28/17
Some people with Alzheimer’s say…
“I had someone help complete my advance directives and medical
durable power of attorney.”
“Write your wishes down. Make a list.”
“I hope to be able to talk with my family about future plans.”
“Do only what you can reasonably manage! Reduce obligations and
delegate details whenever possible.”
“I felt so much better knowing my family wouldn’t have to wonder
what I would want.”
My thoughts…
People who I want involved in
my legal and/or financial affairs:
__________________
__________________
__________________
__________________
Things that are important to me
in my future care:
__________________
__________________
__________________
__________________
I may need professional legal
and/or financial guidance on:
__________________
__________________
__________________
__________________
Taking Action Workbook
273/28/17
Things I can do now:
•• Make legal, medical and
financial decisions early. Talk
with my family or friends about
them. Make sure they know
what kind of decisions I want
made for my future.
•• Appoint a trusted family
member or friend to help
manage my finances. This
person can be a joint signer on
bank accounts and could assist
with bill paying.
•• Ask family members or
friends to accompany me at
appointments with lawyers
or other professionals. They
can help explain and interpret
information for me.
•• If I choose to work with a legal
and/or financial professional,
I can bring a list of questions
to ask.
•• Contact the Alzheimer’s
Association to find out where
to get lists of local elder law
professionals who provide legal
and financial assistance.
Notes:
______________________________
______________________________
______________________________
_____________________________
_____________________________
______________________________
______________________________
______________________________
We have prepared for the worst
and now we are planning to live the
best. If the worst comes, we are
ready for it. If it doesn’t, we will have
not wasted today worrying about it.
— Bette Davis
Taking Action Workbook
______________________________
______________________________
______________________________
283/28/17
8. playing it safe
An Alzheimer’s diagnosis means it’s
time to take certain safety measures.
This can help you and your family
members feel more relaxed and
prevent unnecessary problems
from occurring.
At home and away
Most accidents occur at home during
everyday activities such as eating,
bathing and using the bathroom.
Nevertheless, in the early stage of
Alzheimer’s disease, people can live
safely in the comfort of their own
or a care partner’s home as long
as safety measures are in place.
Assess your home and consider
incorporating these changes:
•
urchase small appliances that
P
have automatic shut-off features
if left on for too long.
Taking Action Workbook
•
Install automatic shut-off
equipment on the stove
and oven.
•
Use timers and written reminders
of things to do to stay safe,
such as taking medications on
time, getting your eyes checked
regularly, etc.
•
Move hazardous materials
to a special spot away from
the kitchen.
•
Check fire extinguishers, smoke
detectors and carbon monoxide
detectors, and replace batteries
twice a year.
•
Be sure the home and walkways
are well lit, and use nightlights in
bedrooms and bathrooms.
•
Install grab bars and textured
stickers to slippery tubs and
showers.
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•
emove clutter and tripping
R
hazards throughout the house.
•
ake precautions to ensure
T
firearm safety. Keep firearms
unloaded and locked. Consider
moving firearms to a location
outside of the home, or giving
firearm collections as early
inheritances to those who would
have received them later.
•
•
repare a kit containing extra
P
sets of clothing and medication
in case of an emergency. Include
copies of important documents
and phone numbers.
onsider purchasing a
C
MedicAlert + Alzheimer’s
Association Safe Return ID
bracelet for you and your
care partner. If one of you
has an accident, the other
will be contacted and the
authorities alerted.
®
®
Taking Action Workbook
For more information about staying
safe at home, visit the Tips for Daily
Life section of the Alzheimer’s
Association website
at alz.org.
To drive or not to drive
A diagnosis of Alzheimer’s disease or
a disorder also means that driving will
be impacted. While giving up driving
does not seem to be a major issue
for some, for others it represents a
surrender of independence or a loss
of freedom.
Even early Alzheimer’s disease can
make it hard to drive safely because
the disease can cause temporary
confusion, even in familiar areas. It
also slows reaction time.
It is important that you, your family
and friends all acknowledge what
a difficult decision and change
relinquishing your driving abilities
303/28/17
may be for all. Make sure you
have alternative ways to continue
doing the things you want to do.
Try other forms of transportation
such as taxis, public transportation
or asking someone else to drive.
Staying active and communicating
your feelings about this decision
will help you be in charge of your
transportation plans. Take time to
adjust to the change, when the
time comes.
Warning signs that your driving
may no longer be safe include:
•• Incorrect signaling.
•• Confusing the brake and
gas pedals.
•• Driving at inappropriate speeds.
•• Frequently hitting curbs.
•• Getting lost going to familiar
places.
•• Riding on the wrong side of
the road.
•• Failing to stop at red lights or
stop signs.
At the earliest stage, a person with
Alzheimer’s disease may begin to
have difficulty with complex tasks
such as driving. Although family and
caregivers can watch for signs of
unsafe driving, a proactive strategy
would be to get a comprehensive
Taking Action Workbook
driving evaluation by an occupational
therapy driving rehabilitation
specialist. The evaluation provides
a more objective understanding of
the current impact of the disease on
driving capacity and results in a plan
of options. The goal is always to retain
the highest level of independence
and mobility in the community.
Initial recommendations may include
strategies to reduce driving risk
during the early part of the disease.
The occupational therapist can offer
strategies specific to the individual’s
goals and needs. The American
Occupational Therapy Association
website includes a national database
of driving specialists as well as
a wealth of resources for both
persons with Alzheimer’s disease
and their families.
313/28/17
Ask your physician for a referral or
call the Alzheimer’s Association
24/7 Helpline at 800.272.3900 to
learn if there are driving evaluation
resources in your area. Although it
may be hard to accept what others
have to say, its important to support
your safety and the safety of others.
Talking openly at this early stage
will help everyone to plan for that
time when you’re no longer able
to drive. If you have received a
diagnosis and are still driving, it’s
probably a good idea to take a
driver’s test each year to make sure
that you are still a safe driver.
Traveling away from home also
requires careful planning to
ensure safety, comfort and
enjoyment for everyone:
To learn more about dementia
and driving or to find driving
evaluation resources, visit the
Dementia and Driving Resource
Center at alz.org/driving.
When you travel
•• Evaluate options for the best
type of travel. Based on your
needs, abilities, safety and
preferences, decide what would
provide the most comfort and the
least anxiety.
Taking Action Workbook
•• Do what feels comfortable
for you now, knowing that this
may change.
•• Be aware that changes in
environment can trigger
moments of confusion.
•• Visiting places that were
familiar before the onset of
Alzheimer’s may be easier
than visiting new places.
323/28/17
•• Have a backup plan in case your
trip needs to change unexpectedly.
This may mean buying traveler’s
insurance if you have booked
flights or hotels.
•• Create an itinerary that includes
details about each destination.
Give copies to family members
or friends you will be visiting, or
to emergency contacts at home.
Keep a copy of your itinerary with
you at all times.
•• If you have multiple health
issues, plan trips where
emergency health services and
pharmacies (to refill prescriptions)
are easily accessible.
•• If you are flying or staying in
a hotel, consider informing
the staff ahead of time of any
specific needs so they can be
prepared to assist you.
•• Consider a travel companion
who can provide good company
while easing the stress of travel
logistics.
•• Travel during the time of day
when you feel the best.
•• Keep a bag of essentials with
you that includes medications, a
comfortable change of clothes,
water, snacks and activities.
•• Necessary paperwork includes
your travel itinerary, identification,
a current medications list with all
needed medical and insurance
information, a list of emergency
contacts and telephone numbers,
and photocopies of important legal
documents.
•• Sign up for MedicAlert® +
Alzheimer’s Association
SafeReturn® by calling
888.572.8566 or visiting
alz.org/safety.
•• Allow plenty of time for rest.
Don’t over schedule.
Taking Action Workbook
333/28/17
Some people with Alzheimer’s say…
“I love to drive and it makes me feel independent. At the same time;
I would hate to cause an accident and get hurt — or hurt
someone else.”
“I moved to a senior living facility and now I feel safe. It’s reassuring.”
“Consider carrying a cell phone so that if you get lost, you can call
for help.”
“Take someone with you when you go out. It is safer and more fun.”
My thoughts…
People who can help me
stay safe:
I will know it is time to retire
from driving when:
Things that are important to me
for my safety:
The person I trust to tell me
when to stop driving:
__________________ __________________
__________________ __________________
__________________ __________________
__________________ __________________
__________________ __________________
__________________ __________________
Making safety plans about my
future makes me feel:
__________________
__________________
__________________
Taking Action Workbook
343/28/17
Things I can do now:
•• Keep a list of emergency
telephone numbers posted at
each telephone.
•• Sign up for MedicAlert® +
Alzheimer’s Association
SafeReturn® by calling
888.572.8566 or visiting
alz.org/safety.
•• Use a pillbox to help organize
prescription medicine and
vitamins. Have someone assist
with reminders.
Notes:
•• Use nightlights in hallways,
bedrooms, bathrooms and
stairways.
______________________________
•• Reduce the risk of falls by
removing tripping hazards such
as throw rugs and clutter. Install
grab bars in the shower or
bathtub.
______________________________
______________________________
______________________________
•• Ask family, friends and my
physician for their advice about
when to retire from driving.
______________________________
•• Consider getting assistance
with grocery shopping,
meal planning, cooking and
household repairs.
______________________________
•• Find out about transportation
services in my community.
______________________________
______________________________
______________________________
______________________________
______________________________
______________________________
Taking Action Workbook
353/28/17
9. daily strategies for living
with alzheimer’s
You and your family cannot see damaged
brain cells in the same way that you can
see skin rashes or infections. However,
you will probably notice changes in your
ability to do the things that you want to
do. When you or your family notice these
changes, it is time to make adaptations to
your environment and/or daily routine to
find new ways of doing things.
The disease affects different parts of
your brain. Although you may clearly
remember things from your past, you may
not be able to remember recent events
or schedules. Think of the changes you
experience as symptoms of your disease
and a “disability” that you can learn to
live with. People with Alzheimer’s disease
have much to contribute. You have many
abilities and other people to help you
when you need support along the way.
Strategies for successful coping
with Alzheimer’s
•• Put fewer demands on recent memory
by using notes, timers and other
reminder tools.
•• Keep a notebook containing important
notes, such as phone numbers,
people’s names, appointments, your
address and directions to your home.
•• Write in a book or journal any
thoughts or ideas you want to
hold on to.
•• Post important phone numbers in
large print next to every phone.
•• Do activities you enjoy at the time of
day when you feel best.
•• Educate yourself about the disease.
•• For more tips from the others
living with the disease, visit
alz.org/dailytips.
Follow a familiar daily routine
•• Maintain a consistent routine, taking
advantage of the best time of day to
undertake difficult tasks.
•• Write down a daily, weekly or
monthly schedule.
•• Schedule important activities for the
time of the day you feel best.
•• Slow down — try to do fewer things
each day and allow more time.
•• Take a break if things get difficult.
•• Use a calendar to keep track of time,
schedules and appointments.
It is time for all to stand and cheer for the doer, the achiever — the one who
recognizes the challenge and does something about it.
— Vince Lombardi
Taking Action Workbook
363/28/17
•• Do one thing at a time.
•• Remind yourself daily what you have
and are able to do.
Partner with other people
•• Successfully complete things you can
no longer do by delegating the tasks to
others. You still enjoy the results.
•• Be patient with yourself and others.
•• Explain to others that you have a
brain disease and need assistance.
•• If you can’t stop feeling sad or blue,
consult a physician to determine if
other problems are causing these
feelings. Severe or prolonged
sadness is not normal and can
be treated.
Tips for a helpful environment
•• Don’t be afraid to ask for help.
•• Eliminate clutter, noise, glare and too
much background noise.
•• Try not to blame other people or
yourself when the disease is to blame.
•• Use labels as cues and reminders.
•• Do things with others like shopping,
preparing meals, housekeeping,
exercising, yard work and paying bills.
•• Have someone call to remind you of
meal times, appointments or to take
medication.
•• Make a list of activities, people,
or places that you enjoy now and
schedule these things more frequently.
•• Simplify tasks and routines.
•• Find opportunities for exercise
and activities geared toward your
interests and abilities.
•• Use stress–reducing activities like
meditation, listening to calming
music or exercise.
•• Spend time with family and friends.
•• Share your feelings with others.
•• Acknowledge frustration or sadness by
reaching out to others as needed.
•• Celebrate small successes
and occasions.
•• Consider a support group, especially
an early stage group for people with
Alzheimer’s who would like to take an
active role in seeking help or
helping others.
Taking Action Workbook
373/28/17
Some people with Alzheimer’s say…
“Carry a calendar in your purse or pocket and get a big wall calendar.”
“Try to stay organized. I write things down by keeping a journal and
making lists.”
“I use labels on cupboards, drawers, etc.”
“Delegate to others or forget it. Let some things go. Ask for help.”
“Ask people to give you reminders.”
My thoughts…
My biggest everyday frustration:
Things I have found helpful:
___________________ _________________
___________________ _________________
_________________
Things I would like help with:
_________________
___________________ _________________
___________________
Daily activities I participate in:
________________
___________________ 2) ________________
___________________ 3) ________________
___________________ 4) ________________
5) ________________
People I would like on my
care team:
Taking Action Workbook
1)
383/28/17
Things I can do now:
•• Keep clocks and calendars
around the house for easy
reference. Use the calendar to
mark off days and keep track
of time.
•• Have a familiar routine each day.
•• Keep important items like my
keys, purse, glasses in the same
place all the time.
•• Make a “reminder” book.
Keep it with me at all times.
Include emergency information,
people’s names, telephone
numbers, important health
information, a map of where I
live, appointments, to-do lists,
medications, thoughts I want to
hold on to.
•• Use pillboxes to remind me
when to take my medications.
•• Use voicemail or an
answering machine, and
email to keep track
of messages.
•• Post important phone
numbers in large print
by the phone. Include
emergency numbers and
my home address with a
description of where I live.
•• Post daily activities
and reminders on a
whiteboard located in a
prominent place.
•• Hire someone to help with
housekeeping, cooking, yard
work, etc.
•• Get an easy-to-read digital clock
that displays the time and date.
Courage does not always roar.
Sometimes courage is that quiet
voice at the end of the day saying,
“I will try again tomorrow.”
—Mary Anne Radmacher
Taking Action Workbook
393/28/17
10. coping with changes
You are learning more about your disease
and about what you can and cannot do.
You are experiencing many changes in
yourself, in your daily routine and in your
relationships. Your feelings may be reflecting
all of these changes as well.
It is very common for people with
Alzheimer’s disease to have periods
of time when they feel like they are
on an emotional roller coaster. You may feel
worried, angry or sad more often
than usual. You may have times when
you are unsure of where to turn and that no
one can possibly understand what you’re
going through.
You may also have periods when you feel
lonely, embarrassed or guilty. Having these
feelings is very normal. The ways you cope
with them will be uniquely yours.
You are the only person who
can change how you feel about your
diagnosis.
•• Pay attention to your feelings and
discuss them with your doctor, family
and friends.
•• Try to do things you enjoy to make
yourself feel better.
•• Join a support group of people with
memory loss who are experiencing
similar feelings. Use ALZConnected
(alzconnected.org), an online social
networking community powered by the
Alzheimer’s Association,
to connect with others daily.
•• Identify times that you have
successfully dealt with challenges
and feelings in the past.
See if you can use some of those
techniques to help you adjust to your
current situation.
•• Express your emotions with people you
trust.
•• Use humor to cope with frustration.
Laugh when you can.
•• Use music, massage, writing, gardening,
exercise and other activities to turn
troublesome feelings into a hopeful,
positive attitude. Always consult a
physician before starting any
exercise program.
Taking Action Workbook
Not everything that is faced can
be changed but nothing can be
changed until it’s faced.
— James Baldwin
403/28/17
Some people with Alzheimer’s say…
“Live each day to the fullest!”
“Do the things you can do.”
“Get out of the house and walk. It helps keep you mentally and
physically active.”
“Don’t give up. Keep trying.”
My thoughts…
My stress increases when:
I feel happy when:
My stress decreases when:
I feel angry when:
The things that help me reduce
stress include:
I feel lonely when:
__________________ __________________
__________________ __________________
__________________ __________________
__________________ __________________
__________________ __________________
__________________ __________________
__________________
__________________ __________________
__________________ __________________
__________________
I feel embarrassed when:
__________________
I feel best when:
__________________ __________________
__________________ __________________
__________________
I feel sad when:
__________________
__________________
__________________
Taking Action Workbook
413/28/17
Things I can do now:
•• Accept my changing feelings
as a normal part of living with
Alzheimer’s disease.
•• Enjoy more time with family
and friends.
•• Stay active, get involved,
volunteer, garden, take an art
class; attend a movie, concert or
ballgame; get involved with an
Alzheimer’s Association Social
Engagement Program.
•• Participate in community centers
and activities for people with
memory loss.
•• Have hope, and advocate for
myself and others.
Notes:
•• Laugh as much as possible.
______________________________
•• Keep my body active. Go for
a walk with a friend or take an
exercise class.
______________________________
______________________________
•• Listen to music.
•• Be easy on myself when I feel
down. Know that this is normal.
See my doctor if sadness persists.
No one is useless in this world
who lightens the burden of it to
anyone else.
— Charles Dickens
Taking Action Workbook
_____________________________
_____________________________
______________________________
______________________________
______________________________
423/28/17
11. opportunities for
supporting research
Despite increasing momentum in Alzheimer’s
research, we still have two main obstacles
to overcome.
Ultimately thousands benefit from the
willingness of those who choose to
become involved.
First, we need volunteers for clinical trials.
Volunteering to participate in a study is one of
the greatest ways someone can help move
Alzheimer’s research forward.
Alzheimer’s Association
TrialMatch®
Second, we need a significant increase
in federal research funding. Investing in
research now will cost our nation far less than
the cost of caring for the rising number of
Americans who will be affected by Alzheimer’s
disease in coming decades.
—William Theis, Ph.D., senior scientist in
residence, Alzheimer’s Association
Over the last couple of decades, scientists
have made enormous strides in understanding
how Alzheimer’s disease affects the brain.
Many of these recent insights point toward
new breakthroughs
for treatment and risk reduction.
Scientists continue to make new discoveries,
and progress is advancing very quickly on
many fronts. In fact, at any given time, several
hundred studies are recruiting participants to
help explore these exciting new approaches.
You can make a difference! Research, including
clinical studies, is the engine that powers medical
progress. Scientists work constantly to find better
ways to treat diseases. Improved treatments
can never become a reality without human
volunteers. No one ever chooses to become
ill, but anyone can consider helping to advance
knowledge about an illness affecting them or
someone close to them.
TrialMatch is a free, easy-to-use clinical
studies matching service that connects
individuals with Alzheimer’s disease,
caregivers, healthy volunteers and physicians
with current studies. Our continuously
updated database of 225+ Alzheimer’s clinical
studies includes both pharmacological (drug)
and non-pharmacological (non-drug) studies
being conducted at more than 700 sites
across the country.
Participating in clinical studies gives us
optimism for today and promise for the future.
They provide many participants with access to
cutting-edge treatments and expert medical
care. And some day they will lead us to the end
of this devastating disease.
We need clinical studies to accelerate
progress and provide valuable insight
into potential treatments and methods of
prevention. Without participation, finding a
cure is virtually impossible.
Access TrialMatch online at
alz.org/trialmatch. For additional
assistance, email [email protected]
or call 800.272.3900.
Without participants, however, the progress
is stalled, and scientists report growing
difficulty finding enough volunteers to
complete these studies.
Taking Action Workbook
433/28/17
Some people with Alzheimer’s say…
“Trust that researchers are trying to find the cure.”
“Research gives you courage.”
“We can all help contribute to research by participating and
advocating.”
My thoughts…
I would be willing to participate
in research studies if:
__________________
__________________
__________________
__________________
__________________
__________________
Some questions I would have
for the researchers:
__________________
__________________
__________________
__________________
__________________
__________________
Taking Action Workbook
Being in a research study
would make me feel:
__________________
__________________
__________________
__________________
__________________
__________________
__________________
__________________
Participating in research is an
active altruism, a way to give to
future generations.
— Unknown
443/28/17
Things I can do now:
Notes:
•• Stay informed of new research findings
and stories about Alzheimer’s disease by
visiting alz.org/research.
______________________________
•• Ask my doctor or call the Alzheimer’s
Association about current research
studies that I might be interested in
participating in.
______________________________
_____________________________
•• Work with the Alzheimer’s
Association, family and friends to help
raise money for research and become an
advocate and ask our elected officials to
support Alzheimer’s research.
•• Spread the word that research is the
key to us achieving our vision of a world
without Alzheimer’s disease.
•• Inform my doctor about any research
studies I am participating in.
•• Sign up for research e-news updates
at alz.org/research.
______________________________
_____________________________
______________________________
______________________________
______________________________
______________________________
______________________________
______________________________
______________________________
______________________________
______________________________
______________________________
______________________________
______________________________
______________________________
______________________________
Taking Action Workbook
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12. resources for people with
early alzheimer’s disease
Individual and family
care consultation
Care Consultation is a service that can help
you and your family develop a road map
to navigate through the many thoughts,
emotions and questions you may have
about memory loss and dementia. Care
Consultation can be useful whether
you or someone you love has just been
diagnosed, or if you and your family are
seeing things from different perspectives
and perhaps disagreeing about the next
steps to take.
Education classes
The Alzheimer’s Association provides
workshops, in-person and online to help
you and your family and friends increase
understanding of memory loss, develop
coping strategies, and learn how to make
legal and financial plans. To learn more,
contact the Alzheimer’s Association at
800.272.3900 or visit alz.org.
I Have Alzheimer’s Website
The I Have Alzheimer’s Disease website
(alz.org/IHaveAlz) helps you learn about
Alzheimer’s and what to expect after
a diagnosis, as well as information on
treatments and research and tips on how
to live your best life.
Support Groups
The Alzheimer’s Association offers
professionally led support groups for
people in the early stages of Alzheimer’s
disease and their care partners.
Taking Action Workbook
Community Resource Finder
A comprehensive database of local
programs and services, housing and
care options, and legal expertsall in one
location, allowing users to quickly search,
find and access support. Visit alz.org/crf.
Care Team Calendar
A free, personalized online tool, powered
by Lotsa Helping Hands, that makes it
easy to organize family and friends who
want to help with caregiving and share
activities and information among the care
team. Visit alz.org/carecalendar.
Alzheimer’s Navigator®
An interactive online tool for people
living with dementia and those
who participate in providing care and
making care-related decisions. This
assessment tool evaluates needs,
outlines action steps and links the
user to Alzheimer’s Association
chapter programs and local services.
Visit alz.org/alzheimersnavigator.
ALZConnected®
An online community where people
with Alzheimer’s and other dementias,
caregivers and others affected by the
disease can share questions, experiences
and practical tips via message boards or
create private groups organized around
specific topics. Visit alzconnected.org.
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Alzheimer’s Association National
24/7 Helpline 800.272.3900
The 24/7 Helpline is a constant resource
of information and support. Information
specialists and counselors are available
24 hours a day, 7 days a week and 365
days a year.
Other Online Resources
•• nia.nih.gov/alzheimers
National Institute on Aging
Much of what we see depends on
what we are looking for.
— Phil Calloway
Notes:
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APPOINTMENT LOG
APPOINTMENT
DATE
PATIENT
TIMEAM/PM
DOCTOR
TOP 3 CONCERNS
1.
2.
3.
NOTES
TO DO
NEXT APPOINTMENT
DATE
PATIENT
TIMEAM/PM
Taking Action Workbook
DOCTOR
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MEDICATION LOG
DATE
PATIENT
MEDICATIONS Prescription, Over-the-counter, Vitamins, Herbal Supplements
Prescribing
Doctor
Medication
Dosage
Date
Started
What
for
Side
Effects
Instructions
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
ALLERGIES
Taking Action Workbook
MEDICAL CONDITIONS
THINGS TO AVOID
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acknowledgements
The Living With Alzheimer’s for People with Alzheimer’s Taking Action Workbook
is the fourth edition of the Taking Action Workbook initially developed by the
Alzheimer’s Association Colorado Chapter and then revised and updated by
the Alzheimer’s Association Minnesota–North Dakota Chapter. It serves as the
participant workbook for the Living with Alzheimer’s for People with Alzheimer’s
constituent education program.
Special thanks to:
•• The Alzheimer’s Association Colorado Chapter and Book Project Coordinators:
Cindy Baurer, LCSW, former Family Options Coordinator and Marcia Reish,
BSN, Early Stage Services Coordinator for creating this unique book designed
to educate, inspire and support individuals living with Mild Cognitive Impairment
or early Alzheimer’s disease, with special support from Storm Rogers and
additional work by Liz Simpson, Inge Holmes, Jennifer Robbins, Julia Hallahan,
Gladys Baskin, Mary Jo Cartoni, Frances Taylor, Jackie Roth, Cheryl Parrish, and
Cheryl Siefert.
•• The Minnesota–North Dakota Chapter, and Book Project Coordinators and
Contributors: Michelle Barclay, David Goldberg, and Angela Lunde of the
Minnesota–North Dakota Chapter, with generous support from the Allianz
Life Insurance Company of North America; Park Nicollet Foundation Healthy
Community; Stevens Square Foundation; the Administration on Aging;
Department of Health and Human Services, Washington D.C.; and the
Minnesota Board on Aging, St. Paul, Minn.
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Living with Alzheimer’s for People with Alzheimer’s was developed in conjunction
with a workgroup representing Alzheimer’s Association chapters throughout the
country. The Alzheimer’s Association would like to thank the following individuals
who participated in the development of the program:
Chapter workgroup participants include:
•• Paula Casselman, Resource Center Director, Rochester New York Chapter
•• Emmalie Conner, Regional Director, Colorado Chapter
•• Lisa Gardner Ewald, Family Services Program Coordinator, Greater
Michigan Chapter
•• Ellen Phipps, Vice President Programs & Services, Central and Western
Virginia Chapter
•• Lauren Tiede, Coordinator of Early–Stage Services, New York City Chapter
•• Sara Tucker, Early–Stage Manager, Minnesota–North Dakota Chapter
•• Denyce Willis, Younger–Onset Coordinator, Oklahoma and Arkansas Chapter
•• Carol Wynne, Early–Stage Program Director, Greater Maryland Chapter
National office staff:
•• Ellen Carbonell, Associate Director, Family Programs
•• Ruth Kolb Drew, Director of Family and Information Services
•• Carrie Hill, Family Programs Specialist
Special thanks to members of the Alzheimer’s Association Early–Stage Advisory
Council and their family members who reviewed this workbook and provided their
feedback including: Libby and Jerry Embry, Roger Bateman, and Diana Leggett.
Taking Action Workbook
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The Alzheimer’s Association is the world’s leading voluntary health
organization in Alzheimer’s care, support and research. Our mission is
to eliminate Alzheimer’s disease through the advancement of research;
to provide and enhance care and support for all affected; and to reduce
the risk of dementia through the promotion of brain health.
Our vision is a world without Alzheimer’s®.
Alzheimer’s Association
National Office
225 N. Michigan Ave., Fl. 17
Chicago, IL 60601-7633
800.272.3900
alz.org
©2014 Alzheimer’s Association. All rights reserved.
This is an official publication of the Alzheimer’s
Association but may be distributed by unaffiliated
organizations and individuals. Such distribution does
not constitute an endorsement of these parties or
their activities by the Alzheimer’s Association.
SHOP-14-021 770-10-0027